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Patient Stories

From California to Sydney and everywhere in between, your tales of courage, optimism and perseverance resonate with us. But, more importantly, they give hope to other people impacted by FSGS and Nephrotic Syndrome.

We’re here for everyone impacted by these diseases no matter your age, gender or where you are in the journey. Are you a newly-diagnosed adult patient? Perhaps you’re the parent of a young child waiting for a transplant? Maybe you’re a teen in remission and feeling good? No matter who you are or where you live, we invite you to share your story and help others feel less alone, more inspired and more empowered in their journey.

share your story

Minimal Change Disease (MCD), Nephrotic Syndrome, Other Glomerular Diseases

Helder L.

Hello, my name is Helder, and I was diagnosed with Minimal Change Disease, a form of nephrotic syndrome, at just 2 years old. Now, at 47, I’ve been living with this ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Allie C.

I was diagnosed at five years old. I used to wake up with very puffy eyes, and my parents thought it was just allergies until we went to the doctor. ...

Minimal Change Disease (MCD), Nephrotic Syndrome, Other Glomerular Diseases

Keri B.

Hi. My name is Keri and I am a 34-year-old wife and mother who is diagnosed with Minimal Change Disease.  I remember my diagnosis like it was yesterday because it ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Ruth S.

My FSGS story so far  In trying to put words down to tell my story, I needed to remember things I’d squashed and put aside for self preservations sake. Being ...

Minimal Change Disease (MCD), Nephrotic Syndrome

Stephanie H.

I was diagnosed with Nephrotic Syndrome at the age of 2.5 after my mom took me to six different doctors to understand why I was waking up swollen and puffy. ...

Minimal Change Disease (MCD), Nephrotic Syndrome

Anthony S.

Anthony, my 5-year-old son, has been battling minimal change nephrotic syndrome since he was 2. Diagnosed after a bizarre swelling episode post-COVID, he’s become the “head-scratcher” for doctors due to ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Melissa M.

For a while, I would have flu like symptoms on and off, and no one else around me would be sick. The nausea, dizziness fatigue and sometimes vomiting was not ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Hannah G.

Thank you for taking the time to listen to Hannah’s story. We found out by accident (she had neck pain that sent us to the ER) where they found she ...

Nephrotic Syndrome

Ayeza B.

My daughter’s name is Ayeza. She was diagnosed with CNS at only 1.5 months old. The doctor told us that children with this disease only survive until they are maximum ...

Nephrotic Syndrome

Sawyer R.

Sawyer’s journey began at the tender age of 4, marked by distressing symptoms that initially led to a diagnosis of constipation. However, a persistent feeling urged her family to delve ...

Nephrotic Syndrome

Christopher S.

My journey with kidney disease has been a long one, full of trials and hope. And I have lived through almost every stage of kidney disease there is...

Nephrotic Syndrome

Keyaira S.

At the age of 11, Keyaira was diagnosed with Nephrotic Syndrome. Before being diagnosed, she was a healthy child...

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